Toward the end of Ella Shea’s three-month stay in Boston Children’s Hospital in 2011, when doctors shared the x-rays that showed the treatment for her rare disease was working, her parents were overjoyed. Ella had beat GACI (generalized arterial calcification of infancy), an extremely rare disease with an 85 percent mortality rate.
Her mother Carrie had another thought—the next family facing this diagnosis will have more answers than we did.
Carrie’s hunch ultimately blossomed into something much bigger. She and her husband Michael forged a tremendous bond with another Boston Children’s family struggling with GACI and paved the way for a network of families supporting each other as they parent children with GACI.
Two years later, after an ultrasound showed brightness indicative of calcium in her unborn baby’s aorta, Christine O’Brien found herself Googling “arterial calcification on fetal ultrasound.”
“What I read was heartbreaking. The results pointed to GACI. There had only been 100 cases worldwide, and there is no specific treatment. Most babies die from a heart attack in the first year of life.” …
When Rick and Aimee Bellew learned that their second child Brooks would be born with a cleft lip and soft palate, they weren’t sure what to expect. So like most people looking for information, they took their questions to the Internet—which turned out to be a mistake.
“Just minutes into our first cleft lip search on Google and we were already devastated,” Aimee remembers. “The pictures staring back at us from the computer screen were so severe. We thought ‘there’s no way a child with a condition this serious looking can be otherwise healthy.’ It was very overwhelming.”
In the coming weeks, they met with doctors and specialists for further testing, and everything indicated that—aside from Brooks’s cleft—he was developing like any other healthy baby. And while the Bellews’ local care team gave them good news, they didn’t have the information on cleft lip repair that the family was looking for. …
Kerri Dunn can always tell when her son Peter is determined to do something because when he gets deeply focused his face scrunches up and he squints one eye tightly shut, which his mother says makes him look like a cute, 2-year-old version of Popeye.
It’s a face Kerri sees a lot, because Peter is a very determined little boy. The youngest of six children, Peter is always trying to keep up with his older brothers and sisters—or “my kids” as he calls them. And, despite his smaller size, he still manages to do so—whether they’re walking, running or even climbing trees.
While his determination to keep pace with his older siblings may seem cute on the surface, it’s actually an incredible testament to Peter’s strong will. Not only is he managing to follow in their much larger footsteps, he’s doing so with only fifty percent of a working heart beating inside his chest. …
According to Christian legend, St. George saved the mystical town of Silene—along with a lovely princess—by slaying a dragon that plagued the city. As his namesake, William St. George Hunter (“George”), a 1-year-old heart patient at Boston Children’s Hospital, has shown a similar type of courage and spirit.
George’s battle against his heart condition began before he was born. At 25 weeks of pregnancy, his mother, Elisabeth Hunter, flew to Boston Children’s from South Carolina to undergo a fetal intervention with Wayne Tworetzky, MD, co-director of the Advanced Fetal Care Center and director of fetal cardiac imaging. George was born at Brigham & Women’s and went home with his family after several weeks of observation at Boston Children’s. But the Hunter family returned when George was five weeks old for the physicians to temporarily insert a balloon catheter in his aortic valve, a procedure called balloon valvuloplasty that seeks to dilate a narrowed valve.
“His condition improved after the balloon procedure,” says Elisabeth, “but we knew the treatment was unsustainable.” …